The following section describes some key limitations of the study. The primary limitation of this study was the participants’ limited communication skills. Each
Also, each of the participants had different cognitive ability levels that were reflected in their mannerisms, expressions, and their abilities to clearly articulate their ideas in conversations.
A second critical limitation had to do with the limits of the research methods used in this study. I conducted three repeated focus groups and individual interviews. While I did find that sharing their story with me was perhaps a therapeutic and empowering experience for participants as they received an opportunity to process through the multiple perspectives from the group, I now realize that conducting multiple in-depth interviews would have provided an opportunity for the participants to develop a higher level of trust with me and perhaps with their peers involved in the research. By having had a limited time to build a trusting relationship, it is probable that the participants disclosed only a small part of their perceptions with me and with each other during the group interviews and focus group discussions. That said, despite limited contact, the young women who participated in this study made impromptu connections with other women in the group during the focus group conversations. Interestingly, two of the participants had known each other in high school and were able to revive this connection with one another, which enhanced their feelings of safety and trust.
Another important limitation related to the interpersonal relationships between the members of the focus groups was that when the participants met in the focus groups, what they chose to share or not share over the course of the conversations was influenced by others in the group. It is notable that the perceptions that were shared during the individual interviews depicted insights about the experiences while growing up and their
current understanding of sexuality. The conversational topics appeared to trigger certain responses in individuals. Few of the participants chose to be silent and when ideas prompted others to be brave and share their experiences too.
Another limitation of this study relates to the research methodology that informed the decision to not gain the perspective of the women’s mothers or foster mothers or to
purposely involve them in some manner during the initial stage of the study. Given the sensitivity of the topic and the vulnerabilities of women with intellectual disabilities, participant recruitment was a bit of a struggle in this study. During the participant recruitment period, I was constantly reminded to connect with mothers first and then communicate with the prospective participants. I feel that this could be because of the socially constructed mindset of seeing individuals with
intellectual disabilities as being less-than-competent to make their own decisions. This observation aligns with the past research on the role of parents as lifelong guardians and protectors in the lives of individuals with intellectual disabilities. If I had planned to incorporate this power differential element within the study, it seems likely that gaining access to the participants would have been easier.
Theater activities used during the focus group interviews were designed to
function as ice-breakers to assist the participants to feel comfortable enough to share their perceptions. However, I found that those activities also informed about the ways
participants interact with their own perceptions as well as with the group.
For example, during one of the focus group sessions, two of the four participants were asked to look at themselves (306 degrees) in the mirror, reflect on what they
observed in the mirror, and then talk about their experience. Each woman took her own innovative way to approach this activity. For example, they each looked at different part of their bodies to see themselves, to reflect on their observations and then took unique approaches to share their perceptions. The woman who uses a wheel chair gazed at the top part of the body which was still while the two dancers in the group used variations of dance movements while they looked at themselves in the mirror.
Following this reflective experience, participants were asked to share their
perceptions. The woman who used a wheel chair said, “I don’t see myself at the bottom, I can never see myself naked in the mirror as I hate my body. I can see the upper part of my body, this is me, I like myself this way.”
One of dancers said, “I do this often, I like to see myself in the mirror. I am awesome.” Likewise the other dancer also gave the positive affirmation.
However, the fourth participant who had experienced sexual abuse in the past refused to look into the mirror. In fact she had her head down throughout the entire time that she was asked to gaze in the mirror. At the time of discussion, she said, “I am ok.”
I noted that Sarah chose not to participate in the activity. Sarah was sexually abused. I wonder if this activity brought up her past imagery related to the abuse. Upon reflection, I realized that an important limitation of this research method was that the exercises were not planned based on the trauma-informed approach. I further discuss this concept of trauma-informed approach in chapter 5. For example, I realized that given that there were no alternatives provided to the participants, this limited their ability to
Another limitation of this particular exercise was that I found that the resulting data was difficult to analyze. The activities were designed for the participants to become more comfortable with one another before discussing potentially sensitive topics. While I did record a number of memos and journal entries to aid my own reflection on the
experience, I felt that having a rubric designed in advance of the activity would have been a more useful and reliable way to analyze each women’s responses during the activity.
Another limitation to this study was also related to the recruitment methods I selected for this dissertation research and the topic of generalizability. Because qualitative inquiry is concerned with locating participants who can share their
experiences and who are most appropriate for giving information about the topic at hand, I took the time to locate participants who wanted to speak about their understanding of sexuality. While qualitative inquiry does not strive for generalizability to the larger population, it does provide thick descriptions and rich information to interpret stories and experiences of a few participants rather than many. Although this study did not strive for generalizability, the study did surface important data that challenges some of the accepted wisdom in the field and is therefore useful for those who work with woman with
intellectual disabilities to draw from and apply as they see fit in their own situations. A third limitation related participant recruitment are the methods I initially selected verses the methods that I was eventually forced to employ. At the time of recruitment, I began using convenience sampling methods and the added snowball
sampling methods in order to involved at least eight women in the study. I was dependent upon the brokerages working for and with people with intellectual disabilities and other
organizations in order to connect with the participants. Using the snowball sampling method, I recruited new participants based on the recommendations of those who had already been interviewed. I asked the participants if they knew of peers who might be interested in taking part in this study, and who might be willing to be interviewed. However, due to the sensitive nature of the topic, it was difficult to acquire
recommendations.
Using the snowball sampling method may have limited the pool of potential participants and created a self-selection bias. One of the participants’ mother said, “I tried to talk to other parents, but they were reluctant to let their daughters be part of this
study.” One of the participants said, “I want my friend to be part of the study, but her mother will not allow her to attend.”
Another limitation that arose as a result of using the snowball sampling method was that although I successfully recruited two participants who lived in the same house, this ended up creating attrition within the group. In this case, one of the two women threatened the other to disclose all the intimate information she knew about her from her past. As a result, both women felt unsafe and chose to withdraw from the focus group.
A related limitation of the study was the small sample size. Due to attrition within the group, only three participants attended all three of the focus group meetings. On the first day there were seven participants involved in the focus group. On day two, there were four participants, and on the third day, the group had been reduced to only three participants.
Chapter 4 presents the results emerged out of data analysis stage two. In chapter 5, I discuss the results using the themes merged out of data analysis presented in chapter 3 and use as an overarching lens to discuss the finding of this study.
CHAPTER FIVE
DISCUSSION, CONCLUSION, AND IMPLICATIONS
5.1 Introduction
The purpose of this dissertation research was to explore the role of familial culture in the understanding of sexuality by young women with intellectual disabilities. Additionally, the purpose of this study was to examine the understanding of sexuality by young women with intellectual disabilities through their current life experiences. The data collected were used to address the following research questions: (a) what is the role of familial culture in addressing sexuality for young women (21-35 years), with
intellectual disabilities, and (b) how do young women (21-35 years), with intellectual disabilities describe their understanding of sexuality? The findings of this study suggest that familial culture creates a basic foundation for the study participants’ understanding
of sexuality. However, participants also shared that their individual life experiences helped them develop an understanding of sexuality as adult women with intellectual disabilities. In this chapter, I present a synthesis of the study findings discussed in chapter 4. Additionally, I present an emergent model of a person-centered approach to
understanding sexuality derived from of the findings of the study. As an epilogue, I present the connection of the study to the Ethnodrama and the implications that could be useful for policy and practice. The chapter closes with final conclusion and
findings conferring the research questions. The synthesis is presented to address the two research questions framed for this study:
5.2 Synthesis of the Findings